AIDS at 30: an interview with activist Gregg Gonsalves

Long-time AIDS activist Gregg Gonsalves is often outspoken, and known for saying things like “I’m holding my nose as I say this, but I miss George W. Bush,” as he was quoted in a New York Times article in 2009 criticizing Obama for his lackluster global AIDS plan that aimed to scale back the push to put more people on antiretroviral medication. He has spent more than two decades working on AIDS to address the U.S. and global epidemics, starting out at ACT UP/Boston in the late 80s. One of many accomplishments, Gonsalves is a founding member of the International Treatment Preparedness Coalition, a network of more than 1,000 people from 125 countries advocating for universal access to HIV/AIDS and tuberculosis (TB) treatment. He was also the first-ever recipient of the $100,000 John M. Lloyd AIDS Leadership Award.

In an interview with Meredith Mazzotta for a Science Speaks blog series commemorating 30 years since the first reports of what would come to be known as HIV/AIDS, Gonsalves speaks up about his personal journey to becoming one of the pandemic’s greatest activists, his upcoming AIDS research, and the panic he feels for future funding for AIDS.

AIDS activist Gregg Gonsalves in 1996.

What prompted your involvement in the AIDS movement?The AIDS epidemic has been around my entire adult life. For me it was incredibly personal. When you’re a young college student in the 80s it’s a bit of a sequestered existence. You’re not part of the “big bad world.” I wasn’t paying attention to what was happening.

I met a guy in 1986 or ‘87 and after being together for about a month, he came over one night, drunk, saying, “We have to break up. We have to break up.” This went on for an hour, and finally I got him to tell me what had happened and he said he was HIV positive. At that time I didn’t know anyone who was positive, so that was a shock, and I didn’t know anything about HIV. I thought, “Oh my gosh, he’s going to die.”

So I went searching for information. I was looking for treatment information – I was convinced he had Kaposi’s sarcoma. And I found that information in the treatment committee of ACT UP/Boston. I got to learn about opportunistic infections and all that was known about the virus at the time. I feel like that was the first time I really had any conception of what was happening.

When did you publicly disclose your HIV status and what was it like to do so at that time? Would it be different now?In the early 90s I moved to New York and I was working at ACT UP/New York, and my cousin comes out to me as HIV positive. In 1995/’96 he’s getting very, very sick. So in ‘96 I’m basically taking care of him on his death bed with his family, right at that point in time when the new HIV drugs are coming on line.

As this was happening I thought, “You know, I should get an HIV test.” I’d tested negative before, but helping my cousin die and speaking with Joseph Sonnabend, an amazing clinician for me and for my cousin, I decided to do it. And Joseph called me one day and said he had to talk to me, and he came to my apartment, and I thought this is odd. And he told me I was HIV positive.

The first people I called, other than close friends and family, were Tony Fauci and David Ho and I’m like, “What do I do?” They walked me through what was going on. David took my blood and found that I had a low CD4 [count], and he told me, “You need to go on treatment right now.” In two weeks I was enrolled in a clinical trial. All of my colleagues knew almost immediately because at that point Marvin Schulman was still having Treatment Action Group meetings in a loft on 5th Avenue.

Remember, this is just as information about protease inhibitors (PIs) were coming out.

Today it’s different. I think the abject terror of an HIV diagnosis for people living in the U.S. who have access to medical care is not there… You don’t immediately jump to the idea that you’re going to die. At the time I was diagnosed, I was taking care of my cousin who was on his death bed; my image of AIDS was of my dying cousin. Now if you get a diagnosis it’s not such a grim prognosis. For millions of people, their fate was that of my cousin – the drugs were so close but so far out of reach – he just got sick too soon. It’s a reality for millions of people today. So when people say, “Oh we can’t afford to treat people with HIV. It’s becoming an entitlement,” we need to reflect on this abject terror. “We have what it takes to keep you alive, but we won’t pay for it. Your family is going to watch you die.”

Fifteen years have passed since 1996 and for many people AIDS is like diabetes or hypertension – take some medicine and you’ll generally be fine and you’ll have a long and relatively healthy life. For others it’s still a death sentence, but death by public policy this time.

What were the most memorable moments in the epidemic for you as an activist?In terms of the history, 1996 and 2000 were the most memorable. 1996 because that was the year that PIs started coming out, these early treatment studies. It was groundbreaking.

Second was the International AIDS Conference in Durban, South Africa, in 2000. I feel like the world woke up to the global epidemic then. I know a lot of activists, doctors, scientists, etcetera, whose lives were changed at that meeting. The combination of the Internet, being on the ground in South Africa with the Treatment Action Campaign (TAC) and being active in protests, with the South African government denying the cause of AIDS – it galvanized a whole new group of people. After that, Gerald Friedland starts working on TB/HIV in South Africa, and he’s just one of many scientists who realized, “Hey, I need to bring my work to bear in the global epidemic as well as the domestic epidemic.”

The other significant event to me came last week. I do think that the HPTN 052 study results changed things. In 2000 we realized that the excuses for providing treatment were false ones. We could afford it, it could be done, it was feasible and practical. For the past ten years we’ve been pitting AIDS treatment against AIDS prevention, but last week’s results put the nail in that coffin. It really dissolves the boundaries between treatment and prevention.

For many of us who work in AIDS it was not a surprising result at all, but the hold-outs like Mead Over don’t really have a leg to stand on anymore. We need male circumcision; we need testing; we need antiretrovirals; we need to put everything together now. This is the era of combination prevention. Now we need studies that show how best to combine these evidence-based prevention methods, to tell us how to craft this new era in AIDS prevention. It’s completely exciting to me; I think it’s as big as ‘96. The big question to me is, “Why didn’t we find this out earlier?”

Where you are now?I founded the Treatment Action Group (TAG), I founded the International Treatment Preparedness Coalition (ITPC), I’ve been working non-stop in HIV since 1991… I worked with ARASA [AIDS and Rights Alliance in Southern Africa] with TAC in South Africa. In 2008 I decided I needed a little break and I came up to Yale University to get an undergraduate degree. While I was here I did some organizing around White House and Congressional flat-funding of HIV programs around the world.

I’m graduating on Monday. I had applied to a couple of PhD programs to do basic, bench research on AIDS. It was a painful decision, but a couple of weeks ago I decided, “You know, this is not your future.” I studied biology here and it was exciting, but I know I’m not going to be an AIDS researcher at this point in my life.

I recently found out I was awarded an Open Society Foundation fellowship that will allow me to do independent research over the next year. I will be looking at South Africa, Ukraine and Brazil to determine why over the past ten years the AIDS response – antiretroviral therapy (ART) in particular – was able to scale up so quickly, yet there is stagnation in other areas of health such as maternal and child health, tuberculosis (TB) and multidrug-resistant TB (MDR-TB). Some of the same people are involved in these other health programs, but they haven’t caught fire the same way that the AIDS response did. What worked and didn’t work in terms of scaling up ART? What did and didn’t happen in maternal child health, MDR-TB? We keep hearing the phrase “building on the success of AIDS,” but what does that really mean, in operational terms?

This project will allow me to pull together people from various areas of expertise. Hopefully by this time next year I’ll have some kind of field research comparing what worked/didn’t work in terms of HIV, maternal and child health, and TB.

And then I don’t know what do afterward!

What do you see as crucial to overcoming AIDS in the future?I’m quite panicky right now. Ten years ago figures like those from the HPTN study would have been able to propel a whole bunch of action. I want to be grateful that we didn’t get our budget slashed as much as others in the Continuing Resolution for fiscal year 2011, that we didn’t get deep cuts in the president’s proposed budget for FY 2012.

The Obama Administration made some devil’s bargain two years ago that said, “It doesn’t matter what anybody else thinks. It doesn’t matter that there was this rush of momentum to scale up AIDS treatment.” They basically put the brakes on it. The U.S. has been a leader in the AIDS response for the past ten years – a big donor, a big implementer. And now, to have a Democratic administration say, “We have other ideas,” is gravely disappointing. It’s not like they’re making huge investments in the Global Health Initiative (GHI) either. I read in a recent Kaiser report that GHI investments are far from being on track. Global health in general is being paid lip service to in the Obama Administration, and there seems to be outright hostility to expanding access to ART.

My greatest fear is that we’ve made all of these successes – ten years ago we started this new phase where it seemed finally the whole world is backing the effort to eradicate HIV. All of a sudden the political will has evaporated. We need a new infiltration of religious leaders, activists, and doctors to do what we did in 1991, ‘96 and 2000, to say, “No, you can’t write us off.”

It always seems like it’s a struggle but that’s where we are again. We’re back to basics – trying to make the case to a White House that treating AIDS is important. It baffles me. I can’t even figure out how Hillary Clinton, whose husband has dedicated his life to this epidemic, has allowed this to happen.

Down in DC they’ll scream about budget deficits, but the twisted priorities of the Hill and the White House are setting us back deeply. This isn’t the Reagan Administration, you know? But we’re back to square one. In these budget negotiations, other people got tax cuts and huge bail outs – the priorities are absolutely skewed. We can build on HPTN -052 and capitalize on this two-for-one benefit. This is an absolute game changer, but it falls on deaf ears in terms of the White House.

What changes have you seen in the advocacy community over time – in terms of tactics, effectiveness, etc?It’s slightly distressing as well. We had this wave in the 80s that precedes my involvement that established all the programs and protections in the U.S. that we largely take for granted now. The AIDS Drug Assistance Program (ADAP), investment in AIDS research – it was all created on this original wave of activism.

When the Clinton Administration came in, we finally had a friend in the White House – and we let our guards down. Domestic AIDS activism has totally evaporated. We have more than 8,000 people on ADAP waiting lists in the U.S. Ten years ago we’d be screaming bloody murder, but now we can barely rouse our national AIDS organizations.

You’d think it might be a relatively small ask, in terms of budgetary sums that are being tossed around, but we can’t even do that. For the waiting lists to be cleared, ADAP needs an additional $360 million or so.

We have an anemic domestic AIDS response that’s unable to secure any sort of basic advances for us. The domestic activism is basically a shadow of its former self, if it exists at all.

Globally, we’re more optimistic. You can go to South Africa, China, India, anywhere and there are people with the specter of death hanging over them who are fighting like we once did for access to treatment, against gender violence, for access to clean needles. Now the energy is in other places around the world, but the need here is still great.

The International AIDS Conference in DC next year – we should have a million people on the National Mall. We should be organizing in every town and city in the country saying that every person in the U.S. has the right to health, as does every person around the world. Having a weak domestic AIDS response is not good for the global AIDS response either.

4 thoughts on “AIDS at 30: an interview with activist Gregg Gonsalves”

WE must engage our governments and all stakeholders to push and scale up Hiv prevention and treatment if the war against AIDS must be won.||Thanks to all the activists and community advocates who have continued to speak for the voiceless and the achievements so far attained,Funding is critical as we face the challenges ahead.

I want to use this opportunity to thank Gregg for his zealous activism. It motivated the way I channeled my need to control the effect HIV had in my life.
It is of concern that activism around HIV is in a state of lethargy because those who have access to treatment now, fail to appreciate that there will always be a need to be vigilant…
Many are still working and some approaches have changes…we hope it is not seen as complacency
Health, social protection, spiritual, financial and family needs are taking a toll on those who are living beyond what was expected..and we now need actions to ensure quality of life for all to ensure we are productive citizens.

In 2005 on my trip to the AIDS conference in Rio de Janeiro I was sitting near Gregg, please can you tell him that the group of MSM I was talking to him today is an NGO in the East region of Dominican Republic Grupo EsteAmor is protecting the right of MSM to health care without discrimination, that I allways remember him and inspire me to continuing working I am 75 year old today. Please can he look to the Caribbian region.